Re: ILD/Pulm. Fibrosis

[Guest guest]

Hi Sunny. Sunny, right?

Welcome kiddo. Sorry you have to be here but glad you found us. The

whole coughing up blood thing is really scary. What does the doc say

about that? I am really surprised the docs have not already

prescribed home O2 for you.

I know you are bewildered with all this and it is frightening. You

have just landed in a soft cushion in the Air Family.

I'm from Lubbock,TX. Also 51. Also have some of the same

things you mentioned, which constitutes the et al in my signature. I

was diagnosed with thyroid cancer on 4/16/99 and also take

synthroid. There are worse things, like NOT taking synthroid with no

thyroid gland.

I recently read a statistic in the NIH info that 9 out of 10 IPF

patients also have GERD. They postulated that possibly some tiny

drops of acid are inhaled into the lungs and cause damage but nobody

really knows. And also there are LOTS of flavors of lung diseases.

It is not a one-size-fits-all thing. Which is part of the reason we

signs our postings with our particular flavor of disease. I will

always believe my own particular stuff resulted from 3 treatments of

I-131 to cure my thyroid cancer.

Lots of our pulmo guys are overworked and short-staffed but make them

answer your questions and talk to you. This is your life but it is

also your peace of mind. Don't be afraid to be unladylike like a lot

of us are taught to be.

Bruce Moreland is an excellent source of information and a

particularly nice guy. He knows stuff so ask him or Peggy .

And welcome.

S, Lubbock, TX

NSIP w/PF 12/2006 et al

>

> I have just been told by my pulmonologist that I have Idiopathic

Interstitial Lung Disease and that I have lost 60% of my lung

function. I also have ground glasslike nodules in my lungs and much

scarring. I am a 51 year old female who until 4 years ago had an

extremely active life. Then it all started with seizures, headaches,

joint pain and fatigue. After many, many tests I was told I had

Lupus then shortly after was diagnosed with Sjogrens then arthritis.

Lots of auto immune stuff. I have been on Prednisone every since.

Without it the pain is just too much. My sed rate and CRP are always

a mess. Then my right thyroid grew a huge benign tumor which had to

be removed and now have to take synthroid for that. I have had 4

gastric bleeding hPylori bacteria ulcers in the past four years. I

am currently recovering from the last. Scope showed the ulcer gone

but the bacteria still very much there. The the gastro doc told me I

have Barrett's Disease probably caused by my GERD which they can not

seem to get under control. The odds are 1 in 100 people's Barrett's

will turn cancerous. There is no treatment once that happens. But

then again out of the millions of people in the US only 100,000 get

Barrett's. It is supposed to be a slow progressive disease but I was

clear then 2 months later my throat is speckled with Barrett's. That

is one of the reasons I am so worried about the ILD diagnoses. Until

3 months ago my lungs felt fine. Now I have a hacking cough with

lots of sputum, my lungs hurt, I cough up blood and upon awaking in

the morning I feel like I'm drowning. I have read that ILD is a slow

progressive disease as well but it doesn't seem to be that way with

me. I read that ILD can be caused by GERD and auto immune diseases.

Does any one know if this is accurate? They haven't put me on oxygen

but I am having a whole bunch of other tests done next week. Does

any one have a guess as to how much lung function I will lose before

they put me on oxygen? Any information about ILD that anyone can

share would help. My doctor is always so in and out that I feel

totally adrift. Thank you.

>

[Guest guest]

Hi Sunny. Sunny, right?

Welcome kiddo. Sorry you have to be here but glad you found us. The

whole coughing up blood thing is really scary. What does the doc say

about that? I am really surprised the docs have not already

prescribed home O2 for you.

I know you are bewildered with all this and it is frightening. You

have just landed in a soft cushion in the Air Family.

I'm from Lubbock,TX. Also 51. Also have some of the same

things you mentioned, which constitutes the et al in my signature. I

was diagnosed with thyroid cancer on 4/16/99 and also take

synthroid. There are worse things, like NOT taking synthroid with no

thyroid gland.

I recently read a statistic in the NIH info that 9 out of 10 IPF

patients also have GERD. They postulated that possibly some tiny

drops of acid are inhaled into the lungs and cause damage but nobody

really knows. And also there are LOTS of flavors of lung diseases.

It is not a one-size-fits-all thing. Which is part of the reason we

signs our postings with our particular flavor of disease. I will

always believe my own particular stuff resulted from 3 treatments of

I-131 to cure my thyroid cancer.

Lots of our pulmo guys are overworked and short-staffed but make them

answer your questions and talk to you. This is your life but it is

also your peace of mind. Don't be afraid to be unladylike like a lot

of us are taught to be.

Bruce Moreland is an excellent source of information and a

particularly nice guy. He knows stuff so ask him or Peggy .

And welcome.

S, Lubbock, TX

NSIP w/PF 12/2006 et al

>

> I have just been told by my pulmonologist that I have Idiopathic

Interstitial Lung Disease and that I have lost 60% of my lung

function. I also have ground glasslike nodules in my lungs and much

scarring. I am a 51 year old female who until 4 years ago had an

extremely active life. Then it all started with seizures, headaches,

joint pain and fatigue. After many, many tests I was told I had

Lupus then shortly after was diagnosed with Sjogrens then arthritis.

Lots of auto immune stuff. I have been on Prednisone every since.

Without it the pain is just too much. My sed rate and CRP are always

a mess. Then my right thyroid grew a huge benign tumor which had to

be removed and now have to take synthroid for that. I have had 4

gastric bleeding hPylori bacteria ulcers in the past four years. I

am currently recovering from the last. Scope showed the ulcer gone

but the bacteria still very much there. The the gastro doc told me I

have Barrett's Disease probably caused by my GERD which they can not

seem to get under control. The odds are 1 in 100 people's Barrett's

will turn cancerous. There is no treatment once that happens. But

then again out of the millions of people in the US only 100,000 get

Barrett's. It is supposed to be a slow progressive disease but I was

clear then 2 months later my throat is speckled with Barrett's. That

is one of the reasons I am so worried about the ILD diagnoses. Until

3 months ago my lungs felt fine. Now I have a hacking cough with

lots of sputum, my lungs hurt, I cough up blood and upon awaking in

the morning I feel like I'm drowning. I have read that ILD is a slow

progressive disease as well but it doesn't seem to be that way with

me. I read that ILD can be caused by GERD and auto immune diseases.

Does any one know if this is accurate? They haven't put me on oxygen

but I am having a whole bunch of other tests done next week. Does

any one have a guess as to how much lung function I will lose before

they put me on oxygen? Any information about ILD that anyone can

share would help. My doctor is always so in and out that I feel

totally adrift. Thank you.

>

[Guest guest]

Hi 'rpickel', do you have another name?

You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.

I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did...

Margaret

To: Breathe-Support Sent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the

bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is

accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

Hi 'rpickel', do you have another name?

You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.

I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did...

Margaret

To: Breathe-Support Sent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the

bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is

accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

Hi Margaret,

This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of treatment for ILD I think he's just being conservative then again he only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way.

Sunny

From: Margaret McConnell

Sent: Friday, February 27, 2009 10:21 PM

To: Breathe-Support

Subject: Re: ILD/Pulm. Fibrosis

Hi 'rpickel', do you have another name?

You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.

I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did...

Margaret

From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

Hi Margaret,

This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of treatment for ILD I think he's just being conservative then again he only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way.

Sunny

From: Margaret McConnell

Sent: Friday, February 27, 2009 10:21 PM

To: Breathe-Support

Subject: Re: ILD/Pulm. Fibrosis

Hi 'rpickel', do you have another name?

You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.

I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did...

Margaret

From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

Hi Margaret,

This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of treatment for ILD I think he's just being conservative then again he only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way.

Sunny

From: Margaret McConnell

Sent: Friday, February 27, 2009 10:21 PM

To: Breathe-Support

Subject: Re: ILD/Pulm. Fibrosis

Hi 'rpickel', do you have another name?

You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.

I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did...

Margaret

From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support Sent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

this is about c reactive protein -- now i wonder if the meds i take for the c reactive protein are the right ones, since maybe the ipf is causing the c reactive protein and not the heart type issues

food for thought

in answer to your question, your body will tell you when you need supplemental oxygen

just remember, when you do need it, it will be one of your "best friends"

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: ILD/Pulm. FibrosisTo: Breathe-Support Date: Saturday, February 28, 2009, 12:05 AM

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the

bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is

accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

Sunny

i don't remember if you said where you live, but i hope it is near a teaching hospital that has a department specializing in interstitial lung diseases, sounds like you do need a second opinion

two things always mentioned to newcomers are the teaching hospital and buying your own oximeter to monitor oxygen levels

with pulmonary fibrosis, the o2 at rest is frequently good, but drops as soon as we move

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Saturday, February 28, 2009, 4:13 AM

Hi Margaret,

This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of

treatment for ILD I think he's just being conservative then again he only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way.

Sunny

From: Margaret McConnell

Sent: Friday, February 27, 2009 10:21 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: ILD/Pulm. Fibrosis

Hi 'rpickel', do you have another name?

You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.

I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did...

Margaret

From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the

bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is

accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

Joyce,

I don't know that there's any evidence that IPF causes elevated CRP. Mine is caused by my auto-immune disease, dermatomyositis which in turn (they think) caused my NSIP.

Other than auto-immune disease the other most common causes of elevated CRP are cardiac disease and cancer.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, February 28, 2009 9:18:41 AMSubject: Re: ILD/Pulm. Fibrosis

this is about c reactive protein -- now i wonder if the meds i take for the c reactive protein are the right ones, since maybe the ipf is causing the c reactive protein and not the heart type issues

food for thought

in answer to your question, your body will tell you when you need supplemental oxygen

just remember, when you do need it, it will be one of your "best friends"

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund. org

From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>Subject: ILD/Pulm. FibrosisTo: Breathe-Support@ yahoogroups. comDate: Saturday, February 28, 2009, 12:05 AM

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the

bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is

accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

Joyce, I live in a tiny town called Rathdrum Oregon. My doctors are

in Spokane WA but we are closer to Coeur d' Alene, ID. How do you

find a teaching hospital and how do you approach them? Also how much

does an oximeter cost. We me not working and all the medical bills

we are in very poor financial shape. I applied for Social Security 3

years ago and after 2 denials am waiting on a judge. They say it

might take another 17 months but with this new diagnoses things may

go quicker. Do I ask my pulmodoc for a referral for a second opinion

or my primary? I do not want to make my current pulmo guy mad as it

took me sooooooooooo long just to see him the first time. You are

correc the my pulse ox is okay at rest but moving around changes that

drastically. I also wonder if in the morning or if lying in certain

positions makes things worse. I wake up drowning out of breath and

my lungs hurt so bad. It takes quite a while of just sitting up

before I can draw very much breath at all. It seems like the pain in

my lungs is much worse lying on my right side. Is this my

imagination do you think?

>

> From: rpickel1@...

> Subject: Re: ILD/Pulm. Fibrosis

> To: Breathe-Support

> Date: Saturday, February 28, 2009, 4:13 AM

>

>

>

>

>

>

>

> Hi Margaret,

>  

> This site is so wonderful. I can't believe I have gotten so many

nice replies so quickly.  My name is Sunny and I used to live up to

it but the last few years have slowed down my laugh track.  My

pulmdoc found the glass last year but didn't think it worth doing a

biopsy since I did not have any symptoms and had 100% lung function. 

I will find out next week if there are more of the nodules than

before.  I have seen the ground glass nodules mentioned on some med

sites.  I think maybe webmd but I had googled ILD and looked at a lot

of sites.  They did tell me I had COPD last year and put me on oxygen

but I improved so much in 5 months he took me off it.  My O2 at rest

is about 98% but drops significantly when walking.  I think he is

just waiting for the CT and sputum reports before he starts any

treatment.  Since I am already on Prednisone and that seems to be the

first line of treatment for ILD I think he's just being conservative

then again he

> only spent about 2 minutes with me and seemed confused and a

little angry when I started crying after the diagnoses.  When he said

I had already lost 60% lung capacity I was freaked.  My disease seems

to be progressing much more rapidly then usual.  I can deal with the

shortness of breath much easier than I can the chest pain and

coughing.  I am hoping he will do something about that when I see him

next.  I am also considering getting a second opinion since my doc

doesn't seem to have time or compassion.  Don't hesitate to write if

you think I can help in any way.

>  

> Sunny

>

>

>

>

> From: Margaret McConnell

> Sent: Friday, February 27, 2009 10:21 PM

> To: Breathe-Support@ yahoogroups. com

> Subject: Re: ILD/Pulm. Fibrosis

>

>

>

>

>

> Hi 'rpickel', do you have another name?

>  

> You are the first that I have heard use the term 'ground glass' on

this board, that was one of my first PH symptoms. I was diagnosed

with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at

43% lung capacity the first time they gave me a PFT. They called my

pulmonologist immediately and sent me home with oxygen 24/7 right

then at 2lt. We say that we are all different but I would say from my

experience that you need oxygen NOW, especially with all of your

other physical problems. Our bodies need the oxygen to function and

heal properly.  I do not have GERD or any autoimmune disease but

others on the board do and can tell you more about them.

>  

> I am relatively new on the board but can tell you that there is

alot of information to be found for your questions. I hope they give

you oxygen on your next visit, I have a nifty liquid oxygen back

pack. I was very active before also. I would also add not to rush or

be in a hurry, allow extra time and go slow, breath in through your

nose and out through pursed lips so that you don't end up gasping

like a fish out of water...like I did...

>  

> Margaret

>

>

>

>

>

> From: " rpickel1 (AT) msn (DOT) com "

> To: Breathe-Support@ yahoogroups. com

> Sent: Friday, February 27, 2009 8:05:21 PM

> Subject: ILD/Pulm. Fibrosis

>

>

>

>

> I have just been told by my pulmonologist that I have Idiopathic

Interstitial Lung Disease and that I have lost 60% of my lung

function.  I also have ground glasslike nodules in my lungs and much

scarring.  I am a 51 year old female who until 4 years ago had an

extremely active life.  Then it all started with seizures, headaches,

joint pain and fatigue.  After many, many tests I was told I had

Lupus then shortly after was diagnosed with Sjogrens then arthritis. 

Lots of auto immune stuff. I have been on Prednisone every since.. 

Without it the pain is just too much. My sed rate and CRP are always

a mess.  Then my right thyroid grew a huge benign tumor which had to

be removed and now have to take synthroid for that.  I have had 4

gastric bleeding hPylori bacteria ulcers in the past four years.  I

am currently recovering from the last.  Scope showed the ulcer gone

but the bacteria still very much there.  The the gastro doc told me I

have

> Barrett's Disease probably caused by my GERD which they can not

seem to get under control.  The odds are 1 in 100 people's Barrett's

will turn cancerous. There is no treatment once that happens.  But

then again out of the millions of people in the US only 100,000 get

Barrett's.  It is supposed to be a slow progressive disease but I was

clear then 2 months later my throat is speckled with Barrett's.  That

is one of the reasons I am so worried about the ILD diagnoses.  Until

3 months ago my lungs felt fine.  Now I have a hacking cough with

lots of sputum, my lungs hurt, I cough up blood and upon awaking in

the morning I feel like I'm drowning.  I have read that ILD is a slow

progressive disease as well but it doesn't seem to be that way with

me.  I read that ILD can be caused by GERD and auto immune diseases. 

Does any one know if this is accurate?  They haven't put me on oxygen

but I am having a whole bunch of other tests done next week.  Does

> any one have a guess as to how much lung function I will lose

before they put me on oxygen?  Any information about ILD that anyone

can share would help.  My doctor is always so in and out that I feel

totally adrift.  Thank you.

>

[Guest guest]

Joyce, I live in a tiny town called Rathdrum Oregon. My doctors are

in Spokane WA but we are closer to Coeur d' Alene, ID. How do you

find a teaching hospital and how do you approach them? Also how much

does an oximeter cost. We me not working and all the medical bills

we are in very poor financial shape. I applied for Social Security 3

years ago and after 2 denials am waiting on a judge. They say it

might take another 17 months but with this new diagnoses things may

go quicker. Do I ask my pulmodoc for a referral for a second opinion

or my primary? I do not want to make my current pulmo guy mad as it

took me sooooooooooo long just to see him the first time. You are

correc the my pulse ox is okay at rest but moving around changes that

drastically. I also wonder if in the morning or if lying in certain

positions makes things worse. I wake up drowning out of breath and

my lungs hurt so bad. It takes quite a while of just sitting up

before I can draw very much breath at all. It seems like the pain in

my lungs is much worse lying on my right side. Is this my

imagination do you think?

>

> From: rpickel1@...

> Subject: Re: ILD/Pulm. Fibrosis

> To: Breathe-Support

> Date: Saturday, February 28, 2009, 4:13 AM

>

>

>

>

>

>

>

> Hi Margaret,

>  

> This site is so wonderful. I can't believe I have gotten so many

nice replies so quickly.  My name is Sunny and I used to live up to

it but the last few years have slowed down my laugh track.  My

pulmdoc found the glass last year but didn't think it worth doing a

biopsy since I did not have any symptoms and had 100% lung function. 

I will find out next week if there are more of the nodules than

before.  I have seen the ground glass nodules mentioned on some med

sites.  I think maybe webmd but I had googled ILD and looked at a lot

of sites.  They did tell me I had COPD last year and put me on oxygen

but I improved so much in 5 months he took me off it.  My O2 at rest

is about 98% but drops significantly when walking.  I think he is

just waiting for the CT and sputum reports before he starts any

treatment.  Since I am already on Prednisone and that seems to be the

first line of treatment for ILD I think he's just being conservative

then again he

> only spent about 2 minutes with me and seemed confused and a

little angry when I started crying after the diagnoses.  When he said

I had already lost 60% lung capacity I was freaked.  My disease seems

to be progressing much more rapidly then usual.  I can deal with the

shortness of breath much easier than I can the chest pain and

coughing.  I am hoping he will do something about that when I see him

next.  I am also considering getting a second opinion since my doc

doesn't seem to have time or compassion.  Don't hesitate to write if

you think I can help in any way.

>  

> Sunny

>

>

>

>

> From: Margaret McConnell

> Sent: Friday, February 27, 2009 10:21 PM

> To: Breathe-Support@ yahoogroups. com

> Subject: Re: ILD/Pulm. Fibrosis

>

>

>

>

>

> Hi 'rpickel', do you have another name?

>  

> You are the first that I have heard use the term 'ground glass' on

this board, that was one of my first PH symptoms. I was diagnosed

with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at

43% lung capacity the first time they gave me a PFT. They called my

pulmonologist immediately and sent me home with oxygen 24/7 right

then at 2lt. We say that we are all different but I would say from my

experience that you need oxygen NOW, especially with all of your

other physical problems. Our bodies need the oxygen to function and

heal properly.  I do not have GERD or any autoimmune disease but

others on the board do and can tell you more about them.

>  

> I am relatively new on the board but can tell you that there is

alot of information to be found for your questions. I hope they give

you oxygen on your next visit, I have a nifty liquid oxygen back

pack. I was very active before also. I would also add not to rush or

be in a hurry, allow extra time and go slow, breath in through your

nose and out through pursed lips so that you don't end up gasping

like a fish out of water...like I did...

>  

> Margaret

>

>

>

>

>

> From: " rpickel1 (AT) msn (DOT) com "

> To: Breathe-Support@ yahoogroups. com

> Sent: Friday, February 27, 2009 8:05:21 PM

> Subject: ILD/Pulm. Fibrosis

>

>

>

>

> I have just been told by my pulmonologist that I have Idiopathic

Interstitial Lung Disease and that I have lost 60% of my lung

function.  I also have ground glasslike nodules in my lungs and much

scarring.  I am a 51 year old female who until 4 years ago had an

extremely active life.  Then it all started with seizures, headaches,

joint pain and fatigue.  After many, many tests I was told I had

Lupus then shortly after was diagnosed with Sjogrens then arthritis. 

Lots of auto immune stuff. I have been on Prednisone every since.. 

Without it the pain is just too much. My sed rate and CRP are always

a mess.  Then my right thyroid grew a huge benign tumor which had to

be removed and now have to take synthroid for that.  I have had 4

gastric bleeding hPylori bacteria ulcers in the past four years.  I

am currently recovering from the last.  Scope showed the ulcer gone

but the bacteria still very much there.  The the gastro doc told me I

have

> Barrett's Disease probably caused by my GERD which they can not

seem to get under control.  The odds are 1 in 100 people's Barrett's

will turn cancerous. There is no treatment once that happens.  But

then again out of the millions of people in the US only 100,000 get

Barrett's.  It is supposed to be a slow progressive disease but I was

clear then 2 months later my throat is speckled with Barrett's.  That

is one of the reasons I am so worried about the ILD diagnoses.  Until

3 months ago my lungs felt fine.  Now I have a hacking cough with

lots of sputum, my lungs hurt, I cough up blood and upon awaking in

the morning I feel like I'm drowning.  I have read that ILD is a slow

progressive disease as well but it doesn't seem to be that way with

me.  I read that ILD can be caused by GERD and auto immune diseases. 

Does any one know if this is accurate?  They haven't put me on oxygen

but I am having a whole bunch of other tests done next week.  Does

> any one have a guess as to how much lung function I will lose

before they put me on oxygen?  Any information about ILD that anyone

can share would help.  My doctor is always so in and out that I feel

totally adrift.  Thank you.

>

[Guest guest]

Hoyce, my CRP and Sed rate were part of the critera for my Lupus and

Sjogrens diagnoses. So mine abnormal blood tests in that area were

there years ago when my lungs were clear. I agree with you about the

O2. I believe I do need it at night and when up and around but my

doc is so conservitive and busy. He was gone before I could even get

an explanation of his diagnoses, a prognosis or discuss treatment. I

wasn't even given the opportunity to ask if there was a way to

relieve my lung pain. Unfortunately the news from him has stressed

me so badly that my Lupus has started to flare from the neck down.

The joint pain is unreal and today I had a horrible cramp in my leg

that took forever to go away. I am wondering if low O2 could cause

this as it was not a normal auto immune symptom before and only

started about 3 months ago. This is all so confusing. I wish my

doctors talked to each other about my health so I could sort out

what's causing different things. Oh well, if wishes were horses mine

would have wings and I'd fly away.

>

> From: rpickel1@...

> Subject: ILD/Pulm. Fibrosis

> To: Breathe-Support

> Date: Saturday, February 28, 2009, 12:05 AM

>

>

>

>

>

>

>

> I have just been told by my pulmonologist that I have Idiopathic

Interstitial Lung Disease and that I have lost 60% of my lung

function.  I also have ground glasslike nodules in my lungs and much

scarring.  I am a 51 year old female who until 4 years ago had an

extremely active life.  Then it all started with seizures, headaches,

joint pain and fatigue.  After many, many tests I was told I had

Lupus then shortly after was diagnosed with Sjogrens then arthritis. 

Lots of auto immune stuff. I have been on Prednisone every since. 

Without it the pain is just too much. My sed rate and CRP are always

a mess.  Then my right thyroid grew a huge benign tumor which had to

be removed and now have to take synthroid for that.  I have had 4

gastric bleeding hPylori bacteria ulcers in the past four years.  I

am currently recovering from the last.  Scope showed the ulcer gone

but the bacteria still very much there.  The the gastro doc told me I

have

> Barrett's Disease probably caused by my GERD which they can not

seem to get under control.  The odds are 1 in 100 people's Barrett's

will turn cancerous. There is no treatment once that happens.  But

then again out of the millions of people in the US only 100,000 get

Barrett's.  It is supposed to be a slow progressive disease but I was

clear then 2 months later my throat is speckled with Barrett's.  That

is one of the reasons I am so worried about the ILD diagnoses.  Until

3 months ago my lungs felt fine.  Now I have a hacking cough with

lots of sputum, my lungs hurt, I cough up blood and upon awaking in

the morning I feel like I'm drowning.  I have read that ILD is a slow

progressive disease as well but it doesn't seem to be that way with

me.  I read that ILD can be caused by GERD and auto immune diseases. 

Does any one know if this is accurate?  They haven't put me on oxygen

but I am having a whole bunch of other tests done next week.  Does

> any one have a guess as to how much lung function I will lose

before they put me on oxygen?  Any information about ILD that anyone

can share would help.  My doctor is always so in and out that I feel

totally adrift.  Thank you.

>

[Guest guest]

Beth,

What made your doctor think your IPF was caused by the auto immune

disease? After looking at lots of sites no one seems to agree but

Lupus and Sjogrens are mentioned as likely causes but so is smoking

and unfortunately I did that for 20 years. I have been feeling guilt

consumed that I did this to myself by smoking so deserve it somehow.

It has been very depressing and makes me not want to tell a sole that

knows I used to smoke because I don't want to hear what they might

say. Sunny

>

> From: rpickel1 (AT) msn (DOT) com

> Subject: ILD/Pulm. Fibrosis

> To: Breathe-Support@ yahoogroups. com

> Date: Saturday, February 28, 2009, 12:05 AM

>

>

> I have just been told by my pulmonologist that I have Idiopathic

Interstitial Lung Disease and that I have lost 60% of my lung

function.  I also have ground glasslike nodules in my lungs and much

scarring.  I am a 51 year old female who until 4 years ago had an

extremely active life.  Then it all started with seizures, headaches,

joint pain and fatigue.  After many, many tests I was told I had

Lupus then shortly after was diagnosed with Sjogrens then arthritis. 

Lots of auto immune stuff. I have been on Prednisone every since. 

Without it the pain is just too much. My sed rate and CRP are always

a mess.  Then my right thyroid grew a huge benign tumor which had to

be removed and now have to take synthroid for that.  I have had 4

gastric bleeding hPylori bacteria ulcers in the past four years.  I

am currently recovering from the last.  Scope showed the ulcer gone

but the bacteria still very much there.  The the gastro doc told me I

have

> Barrett's Disease probably caused by my GERD which they can not

seem to get under control.  The odds are 1 in 100 people's Barrett's

will turn cancerous. There is no treatment once that happens.  But

then again out of the millions of people in the US only 100,000 get

Barrett's.  It is supposed to be a slow progressive disease but I was

clear then 2 months later my throat is speckled with Barrett's.  That

is one of the reasons I am so worried about the ILD diagnoses.  Until

3 months ago my lungs felt fine.  Now I have a hacking cough with

lots of sputum, my lungs hurt, I cough up blood and upon awaking in

the morning I feel like I'm drowning.  I have read that ILD is a slow

progressive disease as well but it doesn't seem to be that way with

me.  I read that ILD can be caused by GERD and auto immune diseases. 

Does any one know if this is accurate?  They haven't put me on oxygen

but I am having a whole bunch of other tests done next week.  Does

> any one have a guess as to how much lung function I will lose

before they put me on oxygen?  Any information about ILD that anyone

can share would help.  My doctor is always so in and out that I feel

totally adrift.  Thank you.

>

[Guest guest]

Beth,

What made your doctor think your IPF was caused by the auto immune

disease? After looking at lots of sites no one seems to agree but

Lupus and Sjogrens are mentioned as likely causes but so is smoking

and unfortunately I did that for 20 years. I have been feeling guilt

consumed that I did this to myself by smoking so deserve it somehow.

It has been very depressing and makes me not want to tell a sole that

knows I used to smoke because I don't want to hear what they might

say. Sunny

>

> From: rpickel1 (AT) msn (DOT) com

> Subject: ILD/Pulm. Fibrosis

> To: Breathe-Support@ yahoogroups. com

> Date: Saturday, February 28, 2009, 12:05 AM

>

>

> I have just been told by my pulmonologist that I have Idiopathic

Interstitial Lung Disease and that I have lost 60% of my lung

function.  I also have ground glasslike nodules in my lungs and much

scarring.  I am a 51 year old female who until 4 years ago had an

extremely active life.  Then it all started with seizures, headaches,

joint pain and fatigue.  After many, many tests I was told I had

Lupus then shortly after was diagnosed with Sjogrens then arthritis. 

Lots of auto immune stuff. I have been on Prednisone every since. 

Without it the pain is just too much. My sed rate and CRP are always

a mess.  Then my right thyroid grew a huge benign tumor which had to

be removed and now have to take synthroid for that.  I have had 4

gastric bleeding hPylori bacteria ulcers in the past four years.  I

am currently recovering from the last.  Scope showed the ulcer gone

but the bacteria still very much there.  The the gastro doc told me I

have

> Barrett's Disease probably caused by my GERD which they can not

seem to get under control.  The odds are 1 in 100 people's Barrett's

will turn cancerous. There is no treatment once that happens.  But

then again out of the millions of people in the US only 100,000 get

Barrett's.  It is supposed to be a slow progressive disease but I was

clear then 2 months later my throat is speckled with Barrett's.  That

is one of the reasons I am so worried about the ILD diagnoses.  Until

3 months ago my lungs felt fine.  Now I have a hacking cough with

lots of sputum, my lungs hurt, I cough up blood and upon awaking in

the morning I feel like I'm drowning.  I have read that ILD is a slow

progressive disease as well but it doesn't seem to be that way with

me.  I read that ILD can be caused by GERD and auto immune diseases. 

Does any one know if this is accurate?  They haven't put me on oxygen

but I am having a whole bunch of other tests done next week.  Does

> any one have a guess as to how much lung function I will lose

before they put me on oxygen?  Any information about ILD that anyone

can share would help.  My doctor is always so in and out that I feel

totally adrift.  Thank you.

>

[Guest guest]

What is ILD? Ginny, IPF6-08,COPD5-98,Richmond,VA

To: Breathe-Support Sent: Saturday, February 28, 2009 4:13:12 AMSubject: Re: ILD/Pulm. Fibrosis

Hi Margaret,

This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of

treatment for ILD I think he's just being conservative then again he only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way.

Sunny

From: Margaret McConnell

Sent: Friday, February 27, 2009 10:21 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: ILD/Pulm. Fibrosis

Hi 'rpickel', do you have another name?

You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.

I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also.. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did...

Margaret

From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the

bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is

accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

What is ILD? Ginny, IPF6-08,COPD5-98,Richmond,VA

To: Breathe-Support Sent: Saturday, February 28, 2009 4:13:12 AMSubject: Re: ILD/Pulm. Fibrosis

Hi Margaret,

This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of

treatment for ILD I think he's just being conservative then again he only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way.

Sunny

From: Margaret McConnell

Sent: Friday, February 27, 2009 10:21 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: ILD/Pulm. Fibrosis

Hi 'rpickel', do you have another name?

You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.

I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also.. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did...

Margaret

From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the

bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is

accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

What is ILD? Ginny, IPF6-08,COPD5-98,Richmond,VA

To: Breathe-Support Sent: Saturday, February 28, 2009 4:13:12 AMSubject: Re: ILD/Pulm. Fibrosis

Hi Margaret,

This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of

treatment for ILD I think he's just being conservative then again he only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way.

Sunny

From: Margaret McConnell

Sent: Friday, February 27, 2009 10:21 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: ILD/Pulm. Fibrosis

Hi 'rpickel', do you have another name?

You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.

I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also.. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did...

Margaret

From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the

bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is

accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

Ginny,

ILD is interstitial lung disease. It's the overall category for all the lung diseases you'll see talked about on this board. IPF, NSIP, DIP, UIP are all interstitial lung diseases.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, February 28, 2009 11:04:24 AMSubject: Re: ILD/Pulm. Fibrosis

What is ILD? Ginny, IPF6-08,COPD5- 98,Richmond, VA

From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, February 28, 2009 4:13:12 AMSubject: Re: ILD/Pulm. Fibrosis

Hi Margaret,

This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of

treatment for ILD I think he's just being conservative then again he only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way.

Sunny

From: Margaret McConnell

Sent: Friday, February 27, 2009 10:21 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: ILD/Pulm. Fibrosis

Hi 'rpickel', do you have another name?

You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.

I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also.. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did...

Margaret

From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, February 27, 2009 8:05:21 PMSubject: ILD/Pulm. Fibrosis

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since.. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the

bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is

accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

Interstitial Lung Disease, really Pulm. fibrosis just new fancy name

I think. My diagnosis slip reads " ILD/Pulm. Fibrosis but the doctor

called it Idiopathic Interstitial Lung Disease. Sunny

>

> What is ILD?

>  Ginny, IPF6-08,COPD5-98,Richmond,VA

>

>

>

>

> ________________________________

> From: " rpickel1@... "

> To: Breathe-Support

> Sent: Saturday, February 28, 2009 4:13:12 AM

> Subject: Re: ILD/Pulm. Fibrosis

>

>

> Hi Margaret,

>  

> This site is so wonderful. I can't believe I have gotten so many

nice replies so quickly.  My name is Sunny and I used to live up to

it but the last few years have slowed down my laugh track.  My

pulmdoc found the glass last year but didn't think it worth doing a

biopsy since I did not have any symptoms and had 100% lung function. 

I will find out next week if there are more of the nodules than

before.  I have seen the ground glass nodules mentioned on some med

sites.  I think maybe webmd but I had googled ILD and looked at a lot

of sites.  They did tell me I had COPD last year and put me on oxygen

but I improved so much in 5 months he took me off it.  My O2 at rest

is about 98% but drops significantly when walking.  I think he is

just waiting for the CT and sputum reports before he starts any

treatment.  Since I am already on Prednisone and that seems to be the

first line of treatment for ILD I think he's just being conservative

then again he

> only spent about 2 minutes with me and seemed confused and a

little angry when I started crying after the diagnoses.  When he said

I had already lost 60% lung capacity I was freaked.  My disease seems

to be progressing much more rapidly then usual.  I can deal with the

shortness of breath much easier than I can the chest pain and

coughing.  I am hoping he will do something about that when I see him

next.  I am also considering getting a second opinion since my doc

doesn't seem to have time or compassion.  Don't hesitate to write if

you think I can help in any way.

>  

> Sunny

>

>

> From: Margaret McConnell

> Sent: Friday, February 27, 2009 10:21 PM

> To: Breathe-Support@ yahoogroups. com

> Subject: Re: ILD/Pulm. Fibrosis

>

> Hi 'rpickel', do you have another name?

>

> You are the first that I have heard use the term 'ground glass' on

this board, that was one of my first PH symptoms. I was diagnosed

with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at

43% lung capacity the first time they gave me a PFT. They called my

pulmonologist immediately and sent me home with oxygen 24/7 right

then at 2lt. We say that we are all different but I would say from my

experience that you need oxygen NOW, especially with all of your

other physical problems. Our bodies need the oxygen to function and

heal properly.  I do not have GERD or any autoimmune disease but

others on the board do and can tell you more about them.

>

> I am relatively new on the board but can tell you that there is

alot of information to be found for your questions. I hope they give

you oxygen on your next visit, I have a nifty liquid oxygen back

pack. I was very active before also. I would also add not to rush or

be in a hurry, allow extra time and go slow, breath in through your

nose and out through pursed lips so that you don't end up gasping

like a fish out of water...like I did...

>

> Margaret

>

>

>

>

> ________________________________

> From: " rpickel1 (AT) msn (DOT) com "

> To: Breathe-Support@ yahoogroups. com

> Sent: Friday, February 27, 2009 8:05:21 PM

> Subject: ILD/Pulm. Fibrosis

>

>

> I have just been told by my pulmonologist that I have Idiopathic

Interstitial Lung Disease and that I have lost 60% of my lung

function.  I also have ground glasslike nodules in my lungs and much

scarring.  I am a 51 year old female who until 4 years ago had an

extremely active life.  Then it all started with seizures, headaches,

joint pain and fatigue.  After many, many tests I was told I had

Lupus then shortly after was diagnosed with Sjogrens then arthritis. 

Lots of auto immune stuff. I have been on Prednisone every since.. 

Without it the pain is just too much. My sed rate and CRP are always

a mess.  Then my right thyroid grew a huge benign tumor which had to

be removed and now have to take synthroid for that.  I have had 4

gastric bleeding hPylori bacteria ulcers in the past four years.  I

am currently recovering from the last.  Scope showed the ulcer gone

but the bacteria still very much there.  The the gastro doc told me I

have

> Barrett's Disease probably caused by my GERD which they can not

seem to get under control.  The odds are 1 in 100 people's Barrett's

will turn cancerous. There is no treatment once that happens.  But

then again out of the millions of people in the US only 100,000 get

Barrett's.  It is supposed to be a slow progressive disease but I was

clear then 2 months later my throat is speckled with Barrett's.  That

is one of the reasons I am so worried about the ILD diagnoses.  Until

3 months ago my lungs felt fine.  Now I have a hacking cough with

lots of sputum, my lungs hurt, I cough up blood and upon awaking in

the morning I feel like I'm drowning.  I have read that ILD is a slow

progressive disease as well but it doesn't seem to be that way with

me.  I read that ILD can be caused by GERD and auto immune diseases. 

Does any one know if this is accurate?  They haven't put me on oxygen

but I am having a whole bunch of other tests done next week.  Does

> any one have a guess as to how much lung function I will lose

before they put me on oxygen?  Any information about ILD that anyone

can share would help.  My doctor is always so in and out that I feel

totally adrift.  Thank you.

>

[Guest guest]

Interstitial Lung Disease, really Pulm. fibrosis just new fancy name

I think. My diagnosis slip reads " ILD/Pulm. Fibrosis but the doctor

called it Idiopathic Interstitial Lung Disease. Sunny

>

> What is ILD?

>  Ginny, IPF6-08,COPD5-98,Richmond,VA

>

>

>

>

> ________________________________

> From: " rpickel1@... "

> To: Breathe-Support

> Sent: Saturday, February 28, 2009 4:13:12 AM

> Subject: Re: ILD/Pulm. Fibrosis

>

>

> Hi Margaret,

>  

> This site is so wonderful. I can't believe I have gotten so many

nice replies so quickly.  My name is Sunny and I used to live up to

it but the last few years have slowed down my laugh track.  My

pulmdoc found the glass last year but didn't think it worth doing a

biopsy since I did not have any symptoms and had 100% lung function. 

I will find out next week if there are more of the nodules than

before.  I have seen the ground glass nodules mentioned on some med

sites.  I think maybe webmd but I had googled ILD and looked at a lot

of sites.  They did tell me I had COPD last year and put me on oxygen

but I improved so much in 5 months he took me off it.  My O2 at rest

is about 98% but drops significantly when walking.  I think he is

just waiting for the CT and sputum reports before he starts any

treatment.  Since I am already on Prednisone and that seems to be the

first line of treatment for ILD I think he's just being conservative

then again he

> only spent about 2 minutes with me and seemed confused and a

little angry when I started crying after the diagnoses.  When he said

I had already lost 60% lung capacity I was freaked.  My disease seems

to be progressing much more rapidly then usual.  I can deal with the

shortness of breath much easier than I can the chest pain and

coughing.  I am hoping he will do something about that when I see him

next.  I am also considering getting a second opinion since my doc

doesn't seem to have time or compassion.  Don't hesitate to write if

you think I can help in any way.

>  

> Sunny

>

>

> From: Margaret McConnell

> Sent: Friday, February 27, 2009 10:21 PM

> To: Breathe-Support@ yahoogroups. com

> Subject: Re: ILD/Pulm. Fibrosis

>

> Hi 'rpickel', do you have another name?

>

> You are the first that I have heard use the term 'ground glass' on

this board, that was one of my first PH symptoms. I was diagnosed

with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at

43% lung capacity the first time they gave me a PFT. They called my

pulmonologist immediately and sent me home with oxygen 24/7 right

then at 2lt. We say that we are all different but I would say from my

experience that you need oxygen NOW, especially with all of your

other physical problems. Our bodies need the oxygen to function and

heal properly.  I do not have GERD or any autoimmune disease but

others on the board do and can tell you more about them.

>

> I am relatively new on the board but can tell you that there is

alot of information to be found for your questions. I hope they give

you oxygen on your next visit, I have a nifty liquid oxygen back

pack. I was very active before also. I would also add not to rush or

be in a hurry, allow extra time and go slow, breath in through your

nose and out through pursed lips so that you don't end up gasping

like a fish out of water...like I did...

>

> Margaret

>

>

>

>

> ________________________________

> From: " rpickel1 (AT) msn (DOT) com "

> To: Breathe-Support@ yahoogroups. com

> Sent: Friday, February 27, 2009 8:05:21 PM

> Subject: ILD/Pulm. Fibrosis

>

>

> I have just been told by my pulmonologist that I have Idiopathic

Interstitial Lung Disease and that I have lost 60% of my lung

function.  I also have ground glasslike nodules in my lungs and much

scarring.  I am a 51 year old female who until 4 years ago had an

extremely active life.  Then it all started with seizures, headaches,

joint pain and fatigue.  After many, many tests I was told I had

Lupus then shortly after was diagnosed with Sjogrens then arthritis. 

Lots of auto immune stuff. I have been on Prednisone every since.. 

Without it the pain is just too much. My sed rate and CRP are always

a mess.  Then my right thyroid grew a huge benign tumor which had to

be removed and now have to take synthroid for that.  I have had 4

gastric bleeding hPylori bacteria ulcers in the past four years.  I

am currently recovering from the last.  Scope showed the ulcer gone

but the bacteria still very much there.  The the gastro doc told me I

have

> Barrett's Disease probably caused by my GERD which they can not

seem to get under control.  The odds are 1 in 100 people's Barrett's

will turn cancerous. There is no treatment once that happens.  But

then again out of the millions of people in the US only 100,000 get

Barrett's.  It is supposed to be a slow progressive disease but I was

clear then 2 months later my throat is speckled with Barrett's.  That

is one of the reasons I am so worried about the ILD diagnoses.  Until

3 months ago my lungs felt fine.  Now I have a hacking cough with

lots of sputum, my lungs hurt, I cough up blood and upon awaking in

the morning I feel like I'm drowning.  I have read that ILD is a slow

progressive disease as well but it doesn't seem to be that way with

me.  I read that ILD can be caused by GERD and auto immune diseases. 

Does any one know if this is accurate?  They haven't put me on oxygen

but I am having a whole bunch of other tests done next week.  Does

> any one have a guess as to how much lung function I will lose

before they put me on oxygen?  Any information about ILD that anyone

can share would help.  My doctor is always so in and out that I feel

totally adrift.  Thank you.

>

[Guest guest]

rpickel (what is your name?)

Wow, you have been through so much. I'm sorry for the plates you have to juggle. One good thing tho' is you are in the right place for support and info.

In my case, it wasn't the lung function lost it was that the oxygen level in my blood was not enough...our levels should be above 90-91 all the time. O2 level is measured with an oximeter and many of us have our own. They can be purchased for $65 at

www.portablenebs.com they are FDA approved and work well. It's the yellow one. It just clamps on a finger...

SOB (shortness of breath) is certainly a sign you may need 02.

Are you seeing a pulmonologist?

In what State do you live?

Others will reply who have more knowledge than I do.

But welcome, I'll watch for your posts...

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

ILD/Pulm. Fibrosis

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

rpickel (what is your name?)

Wow, you have been through so much. I'm sorry for the plates you have to juggle. One good thing tho' is you are in the right place for support and info.

In my case, it wasn't the lung function lost it was that the oxygen level in my blood was not enough...our levels should be above 90-91 all the time. O2 level is measured with an oximeter and many of us have our own. They can be purchased for $65 at

www.portablenebs.com they are FDA approved and work well. It's the yellow one. It just clamps on a finger...

SOB (shortness of breath) is certainly a sign you may need 02.

Are you seeing a pulmonologist?

In what State do you live?

Others will reply who have more knowledge than I do.

But welcome, I'll watch for your posts...

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

ILD/Pulm. Fibrosis

I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.

[Guest guest]

Thanks for the welcome Sher. I checked the morning and found out

there is a teaching hospital in Seattle about 7 hours away. I am

going to contact my insurance company and make sure it's covered but

I think I can make an appointment there without a referral. I also

checked in to getting an oximeter. I live in Rathdrum ID. That's

about 6 miles NW of Coeur d' Alene ID and yes I have a pulmodoc that

diagnosed me. I think I am going to start calling him the minute man

cause that's the amount of time he give me. My name is Sunny Pickel.

Yes that's right, my last name is Pickel but at least I didn't grow

up with it like my husband whose name is . He was Dick Pickel

in school. Luckily he is a big guy and he might have been given many

high school swirlees. I am amazed at the support and quality info I

have received since I signed up. Everyone here is just a blessing.

>

> rpickel (what is your name?)

> Wow, you have been through so much. I'm sorry for the plates you

have to juggle. One good thing tho' is you are in the right place for

support and info.

> In my case, it wasn't the lung function lost it was that the oxygen

level in my blood was not enough...our levels should be above 90-91

all the time. O2 level is measured with an oximeter and many of us

have our own. They can be purchased for $65 at

> www.portablenebs.com they are FDA approved and work well. It's

the yellow one. It just clamps on a finger...

> SOB (shortness of breath) is certainly a sign you may need 02.

> Are you seeing a pulmonologist?

> In what State do you live?

> Others will reply who have more knowledge than I do.

> But welcome, I'll watch for your posts...

> MamaSher; 70, IPF 3-06, OR.

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

> ILD/Pulm. Fibrosis

>

>

>

> I have just been told by my pulmonologist that I have Idiopathic

Interstitial Lung Disease and that I have lost 60% of my lung

function. I also have ground glasslike nodules in my lungs and much

scarring. I am a 51 year old female who until 4 years ago had an

extremely active life. Then it all started with seizures, headaches,

joint pain and fatigue. After many, many tests I was told I had

Lupus then shortly after was diagnosed with Sjogrens then arthritis.

Lots of auto immune stuff. I have been on Prednisone every since.

Without it the pain is just too much. My sed rate and CRP are always

a mess. Then my right thyroid grew a huge benign tumor which had to

be removed and now have to take synthroid for that. I have had 4

gastric bleeding hPylori bacteria ulcers in the past four years. I

am currently recovering from the last. Scope showed the ulcer gone

but the bacteria still very much there. The the gastro doc told me I

have Barrett's Disease probably caused by my GERD which they can not

seem to get under control. The odds are 1 in 100 people's Barrett's

will turn cancerous. There is no treatment once that happens. But

then again out of the millions of people in the US only 100,000 get

Barrett's. It is supposed to be a slow progressive disease but I was

clear then 2 months later my throat is speckled with Barrett's. That

is one of the reasons I am so worried about the ILD diagnoses. Until

3 months ago my lungs felt fine. Now I have a hacking cough with

lots of sputum, my lungs hurt, I cough up blood and upon awaking in

the morning I feel like I'm drowning. I have read that ILD is a slow

progressive disease as well but it doesn't seem to be that way with

me. I read that ILD can be caused by GERD and auto immune diseases.

Does any one know if this is accurate? They haven't put me on oxygen

but I am having a whole bunch of other tests done next week. Does

any one have a guess as to how much lung function I will lose before

they put me on oxygen? Any information about ILD that anyone can

share would help. My doctor is always so in and out that I feel

totally adrift. Thank you.

>

[Guest guest]

Thanks for the welcome Sher. I checked the morning and found out

there is a teaching hospital in Seattle about 7 hours away. I am

going to contact my insurance company and make sure it's covered but

I think I can make an appointment there without a referral. I also

checked in to getting an oximeter. I live in Rathdrum ID. That's

about 6 miles NW of Coeur d' Alene ID and yes I have a pulmodoc that

diagnosed me. I think I am going to start calling him the minute man

cause that's the amount of time he give me. My name is Sunny Pickel.

Yes that's right, my last name is Pickel but at least I didn't grow

up with it like my husband whose name is . He was Dick Pickel

in school. Luckily he is a big guy and he might have been given many

high school swirlees. I am amazed at the support and quality info I

have received since I signed up. Everyone here is just a blessing.

>

> rpickel (what is your name?)

> Wow, you have been through so much. I'm sorry for the plates you

have to juggle. One good thing tho' is you are in the right place for

support and info.

> In my case, it wasn't the lung function lost it was that the oxygen

level in my blood was not enough...our levels should be above 90-91

all the time. O2 level is measured with an oximeter and many of us

have our own. They can be purchased for $65 at

> www.portablenebs.com they are FDA approved and work well. It's

the yellow one. It just clamps on a finger...

> SOB (shortness of breath) is certainly a sign you may need 02.

> Are you seeing a pulmonologist?

> In what State do you live?

> Others will reply who have more knowledge than I do.

> But welcome, I'll watch for your posts...

> MamaSher; 70, IPF 3-06, OR.

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

> ILD/Pulm. Fibrosis

>

>

>

> I have just been told by my pulmonologist that I have Idiopathic

Interstitial Lung Disease and that I have lost 60% of my lung

function. I also have ground glasslike nodules in my lungs and much

scarring. I am a 51 year old female who until 4 years ago had an

extremely active life. Then it all started with seizures, headaches,

joint pain and fatigue. After many, many tests I was told I had

Lupus then shortly after was diagnosed with Sjogrens then arthritis.

Lots of auto immune stuff. I have been on Prednisone every since.

Without it the pain is just too much. My sed rate and CRP are always

a mess. Then my right thyroid grew a huge benign tumor which had to

be removed and now have to take synthroid for that. I have had 4

gastric bleeding hPylori bacteria ulcers in the past four years. I

am currently recovering from the last. Scope showed the ulcer gone

but the bacteria still very much there. The the gastro doc told me I

have Barrett's Disease probably caused by my GERD which they can not

seem to get under control. The odds are 1 in 100 people's Barrett's

will turn cancerous. There is no treatment once that happens. But

then again out of the millions of people in the US only 100,000 get

Barrett's. It is supposed to be a slow progressive disease but I was

clear then 2 months later my throat is speckled with Barrett's. That

is one of the reasons I am so worried about the ILD diagnoses. Until

3 months ago my lungs felt fine. Now I have a hacking cough with

lots of sputum, my lungs hurt, I cough up blood and upon awaking in

the morning I feel like I'm drowning. I have read that ILD is a slow

progressive disease as well but it doesn't seem to be that way with

me. I read that ILD can be caused by GERD and auto immune diseases.

Does any one know if this is accurate? They haven't put me on oxygen

but I am having a whole bunch of other tests done next week. Does

any one have a guess as to how much lung function I will lose before

they put me on oxygen? Any information about ILD that anyone can

share would help. My doctor is always so in and out that I feel

totally adrift. Thank you.

>